


My personal story & experiences in life

by Caitlin_S



Category: Original Work, personal story - Fandom
Genre: Discussion of Death, Life Update, Other, hate to do this like this but have to think about, life story
Language: English
Status: In-Progress
Published: 2021-02-20
Updated: 2021-02-20
Packaged: 2021-03-17 09:07:47
Rating: Explicit
Warnings: Creator Chose Not To Use Archive Warnings
Chapters: 1
Words: 2,165
Publisher: archiveofourown.org
Story URL: https://archiveofourown.org/works/29590476
Author URL: https://archiveofourown.org/users/Caitlin_S/pseuds/Caitlin_S
Summary: Hi, I'm Caitlin, this is my personal story.  I don't know how much I'll share, but this is really just for me to have a place to share things that I've gone through & hopefully help anyone going through chronic pain/chronic illness, just not feel so alone, because it's a pretty lonely place out here in the land of chronic pain/illness.   I've had chronic, constant, daily pain for many years, with very little relief from it.   First chapters will just be current updates & request of intrest in possibly taking over my stories. Very much morbid/death discussion, so if that makes you uncomfortable/upset/triggered, don't read first chapter, will update with chapter number at later date for you to skip over that stuff.





	My personal story & experiences in life

A bit of a personal life update, I'm seeking a second opinion, but just in case something happens before then, because there's a chance it might, unless they were just giving me absolute worst case scenario, not really sure. I don't want to say exactly what's going on, because I don't exactly remember what it's called, but there's a chance I may not be alive next month, because they've told me the only option is really surgery. All details on that below, very morbid talk, anyways, if anyone is interested in possibly taking over my fan fictions, when I do pass away, because I’ve been put in that position to have to be prepared for, let me know. I have a lot written already, I have plenty of cheat sheets, basically just might have to finish what I’ve started. Very sorry to be so morbid & I never thought I’d possibly have to do this so openly like this, but I’d want you all to have happy endings to my stories & I’d want them to be finished if I die before I can complete them myself. Please let me know if you’re interested. I do have an email I created months ago just for my fan fictions, which would have to be how I share everything. Everything is in word & excel, but I’m sure we could easily figure something out that works.

God, I’m crying again, and I’ve already cried so much, need to stop crying because that’s something that’s always caused me pain for so many years now & still does. I might do this as my own personal story, just incase I decide I want to share that, because I’m the only one that can really tell that with details that you most likely didn’t want to know/ need to know, but if I want to share, I’d like to just have a place to put it. I’ve always taken life one day at a time since ’09, and that’s how I’ll continue to take life, because life is short & unexpected things happen, plans change & it makes you stronger/a better human being. Also don’t mean to go too religious/god/that stuff, sorry if I’ve upset or offended anyone, just let me know if you’re at all interested in possibly taking over any of my stories. Even if you’d only want to take on a specific one, I’d be fine with that since I’d like them to be finished.

**Very morbid talk below, you’ve been warned, this is literally just my thoughts & feelings, obviously I’m no expert, but I do have to be realistic with myself. I’m not a very hopeful person, I used to be extremely hopeful, but I’ve been through hell & back more times than I can even handle thinking about/let alone sharing. If it ever gets shared with you, it would not be me writing it, if it was obviously me I’ll go on & on, so I think you’d know, but if I do write any of that, I’d put major trigger warnings, and I’d let you know it’s me. But it’s extremely traumatic stuff for me to even think about, let alone try writing about, let alone talking about it out loud. But if future me feels differently, and wants to share things, again I want a space to have that. **

& I'd most likely die on the operating table or be on life support for the rest of my days, sorry to be so morbid & graphic, but so far no one is understanding what I'm saying. Hopefully second opinion person would be more understanding that I will not be a standard case, that it will be the absolute most complicated case of their entire career, because no one that I know of has the same thing that I have. I know it like the back of my hand & hopefully someone will trust me that they'd want other specialty surgeon's expertise, since it'd literally be like the thing on grey's, just to get to where they'd need to go, then they'd somehow have to put it back together & they can't fuck anything up & everyone so far has been completely delusional. & then pretty severe nerve damage that effects my entire body, but especially my upper body & left side, since I'm pretty sure it's a very important nerve considering any time it's been re- hurt/reinjured, I have extremely intense feelings through my entire spine/body. Why are television characters always so much more willing to admit that they don't know everything than actual real humans? I guess that's why it's all fictional & not real. Sorry for getting so morbid, but I have to be the realistic one in the room, since I know my body better than anyone else. This isn't easy for me to share/discusss, I never thought I'd have to be doing this with such uncertainty, but god has either decided once again to show the medical comunity he is just as crazy as me, or that it's my time to come home. This has never been an easy life for me, my situation/case has never been typical/standard. Obviously I'll give updates & let you know what's going on after I get second opinion, please try to be respectful of the fact that I'd need to feel safe/have trust/have faith in a surgical team, since if that's not there, then it's not going to go well, because that's like a number one priority for me. 

Please also know that this was just the first surgery team's advice/opinion/options & a different suregon will hopefully be more willing to understand/at least talk to/possibly involve other suregons, because I would want to be set for sucess, not failure & they might have done it in thousands or hundereds of other people, but I'm not one in a thousand/one in a hundred, I'm always one in a much higher number. The chances of having the type of headache I have, are one in a hundred thousand, I got very lucky, the person who found it had only seen 4 cases of it in his entire career & I'm pretty sure I was case 4 or 5, I don't remember exactly & he's most likely retired by now. 

There's only ever been one person able to phyiscially get a break through my headache, with pretty much mostly/completele relief, and he used a very unconventional approach, could phyiscally feel the headache's aroura/knew when it was really bad. I stopped getting that relief, because each time it returned stronger than before & more painful than ever, plus it just got more difficult to get rid of. 

There's only ever been one person able to physically get a break through my breathing muscle monstrosity/knot/mystery/pain, whatever you want to call it, I lovingly have named it the band of pain, since that's litterally what it is, litterally what it feels like, litterally it's foundation/best way I could describe it since it started. And it was an arm work out, it never lasted more than a few hours and every time it reminded me when it came back, that it's boss, it's incharge & it could twist itself anyway it wanted, that it's very much real, & that the pain could be a whole lot worse. I kid you not, there were more times than not, that she'd have her arms in impossible positions, unable to physically move them any farther, because of the way it twisted/turned/came undone. There were time where she'd start somewhere & it end up realeasing in completely different spots than where she started. More often than not, side muscles would be in the center of my stomach or somewhere in my back, muscles that go over my heart/chest, would be knoted with my diaphram, muscles in my shoulders would be twisted in with muscles in my low back. A suregon needs to be understanding that this is a litteral breathing muscle knot, that every single one is intensely connected to eachother, that it will not be like cutting any normal person with normal muscles open, because this pain of mine isn't normal. I lovingly say it's normal, because it's my own normal, I've had to adjust to it, and deal with the pain for years, also because I like to treat it with the kindness & resepct it deseveres, because it's mind boggiling/stumping & not listening to it's pain has made it worse, it didn't like being untangeled, and I ignored it telling me that it didn't like what I was doing, because I loved feeling like I could breathe normally again. 

I have to deal with the pain and tingling through my whole body any time I touch my nerves myself, let alone when anyone else touches them. I have to deal with the pain that comes with IV's, testing, anything that I put my body through & that's only pain that I understand/have expereinced before. I don't want someone that doesn't believe me when I say I'm at a certain pain level, since I'll be brutally honest when I know it's worse/how much worse it is, than it normally feels. I know none of my pain is normal, I have tried to solve my pain, I've gone down that path, and I've gotten severely, mentally/emotinally, hurt/traumatized/ however you want to put it. I know I have trauma & trust issues, but I need someone understanding & that is willing to understand that I'm not typical, I won't ever be typical & that it most likely will be an extremely complicated surgery, since the band of pain is so complicated & they can't just cut me open & get chicken the second they're face to face with the band of pain, that I wasn't lying when I said it's every single breathing muscle, all tied together. I need someone that believes me up front about it, or is willing to speak to the person who's gotten it out. She even knows it's not going to be a walk in the park, like the surgeon I already saw was acting. Also the resident, was just so rude & everyone kept telling me it was completely out of character for her, I hope you read this one day, maybe you'll understand where my brain has been at, since the start, even with you explaining what would happen with such details, it actually made my concerns even more valid for me, since I was very correct in thinking that anyway they go in, would be through my band of pain. I hope the attending reads this some day & it finally gets through your cocky (sorry to be so brutaly honest, rude & blunt with you), very thick skull, that my pain exsists, my pain is real & it's so much more complex than you even want to admit to yourself. 

Also, if someone's able to one day get really good images of what my band of pain looks like, boy oh boy will I gladly want to share that, I will ask for a dvd copy, cause it needs to be remembered long after me & I ain't donating my body to sience to be an experiment, I already decided that many years ago, when I learned that was a thing you could do. Side note, for the future, for me, because I will most likely forget this, I want to be burried next to Milo & I want him to have a human like funeral, even though he's a dog, because he's the most kindest dog in the world & he made me feel wanted, when I felt so lost/lonely & more depressed than I even knew at the time. I didn't even know I was feeling unwanted, until he showed me that he didn't care who I was before my pain started, that he wanted me now, pain & all, he's been through me getting more chronic pain & still wants me, even though I physically can't do what I used to be able to do. For context, only my extremely imediate family has shown me this & expressed this, my extended family has never, they've never attempted to understand, and they're always wishing for me to go back to normal. They all had hissy fits about me leaving the hospital because I didn't trust the surgeon that was on call & I didn't feel like they understood what I was saying. Just incase all of those movies are right about there being some inbetween world, inbetween life & death, if I don't trust them, then I'll go into the light (won't claim that's real either). Also if you're someone I eventually tell one of my very traumatic stories to, don't say a word, don't comment anything, don't you dare say anything to anyone, because I've most likely sworn you to complete & total secrecy. Yeah, I got to do very morbid things, since there's things I want/don't want to happen & that'd have to be done before surgery.


End file.
